Name: Elisa Seeger
Organization: Aidan Jack Seeger Foundation
Disease focus: Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17,000 people. As it is an X-linked genetic disease, which means, it most severely affects boys and men. ALD involves multiple organs in the body, but most prominently affects the brain and spinal cord. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons. Without the myelin sheath the nerve cells that allow us to think and to control our muscles no longer function correctly. ALD knows no racial, ethnic or geographic barriers. Childhood Cerebral ALD is the most devastating form of ALD, it generally occurs between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they may simply show minor behavioral problems, such as withdrawal or difficulty concentrating, vision problems, or start to have coordination issues. Gradually, as the disease spreads throughout the brain, their symptoms grow worse, including blindness, deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to a vegetative state or die usually within 2-5 years of diagnosis.
Headquarters: Brooklyn, New York
How did you become involved in rare disease: My son Aidan was diagnosed with ALD in 2011. We had never heard of the disease and we were on a quest to try to save his life. We were quickly thrown into trying to understand and navigate what we could do next. It was a very fast education. We were on a plane to Minnesota a week after the diagnosis. The University of Minnesota Masonic Children’s Hospital is probably the world leader in ALD, having done the most transplants and treated the most kids with ALD.
Previous career: I am an entrepreneur. My husband and I own a motorcycle shop. We build custom motorcycles, offer parts and service. I also own a men’s clothing store geared to motorcycle customers.
Education: B.S. in Business Management and Finance from Brooklyn College.
Organization’s mandate: Our mission is to primarily focus on newborn screening. Although we raise money to help families that are affected, and raise awareness and search for a cure, our main goal is newborn screening for ALD, and not only ALD, but to change the landscape for newborn screening. My son spent the last ten months of his life living in a hospital. During that time, I spent a lot of my time doing research about what we could do to save his life. I came across the fact that there was a newborn screening test for ALD but not one state was putting it to use. If we would have known at birth, we could have saved his life. Not only Aidan, but thousands of other boys. When he was diagnosed at six-and-a-half, he was already a late diagnosis. The majority of boys with ALD are diagnosed when it’s too late. Aidan passed after 10 months in the hospital. To have newborn screening passed, became my mission. In 2013, Aidan’s Law was signed in New York. We are the first state to require newborn screening of ALD.
Organization’s strategy: Because of newborn screening in New York, I started our ALD Standards of Care meeting. This past January was our second annual meeting. The reason for that is because when I met families that were diagnosed, they were not getting the correct information. I heard horror stories where the doctors were on Google during their first meeting. That’s how bad it was. We’ve grown from focusing on newborn screening to the bigger picture, which now encompasses developing a parent’s guide to give them a roadmap of what will be happening. ALD is a complex disease. With ALD you have a normal, healthy child. ALD usually does not present before the age of 4, so it will be a multidisciplinary team that needs to follow your son to make sure they will get the best care and best results as far as having a healthy life. We have five states currently testing (New York, Connecticut, California, Minnesota, and Pennsylvania) and four more coming onboard this year (Washington, Florida, Nebraska, and Tennessee). In 2016, I had federal bills introduced in Congress, which would offer the funding in order for every state to test for ALD. Right now, you have to go state-by-state in order to add these diseases to state labs. My mission is to try to change the landscape, not only for my disease, but for every disease. We need to change the way things are done. I don’t believe a child’s life should depend on their zip code.
Funding strategy: We raise money through a variety of different ways. We get grants from different bio or pharma companies to hold our meetings. We hold motorcycle rides in ten different states to raise money for the foundation. Currently, we are all volunteer.
What’s changing at your organization in the next year: We’re trying to figure out different ways to raise money to grow this into a national organization. We’re thinking of changing the name so ALD is in the name of the organization. We are trying to have the most impact on families, so they don’t have to go through what we did.
Management philosophy: I don’t think patience is a virtue God gave me. Persistence is the key.
Guiding principles for running an effective organization: Constantly moving forward. Trying to take the negativity and “nos” and turning them into something positive to fuel my energy for moving forward.
Best way to keep your organization relevant: Research, networking with clinicians in the space, and networking with other advocacy organizations to try to get everyone on the same page and moving forward.
Why people like working for you: We’re doing this because of the children that are affected and trying to make their lives better then the children before them with the same disease.
Mentor: Hunter’s Hope is amazing. Jim Kelly and Jill Kelly are the people I first came in contact with. Their son died of Krabbe disease, which is a similar disease to ALD. I saw how much passion they had for helping others. I felt if they could help others while dealing with their grief, I could do this as well.
On the Job
What inspires you: Meeting the families and knowing their lives and their children’s lives will be different because they were diagnosed due to newborn screening.
What makes you hopeful: I think we are growing. I don’t mean my organization. There’s been more acknowledgment of leukodystrophies. There’s more research being done, and more companies getting involved. The more people that are involved, the closer we will be to a cure, and the closer we will be to making sure to helping make sure this doesn’t keep happening. The advancements we make from year- to-year make me hopeful.
Best organization decision: Deciding to start the organization. That’s something I don’t think I really thought about. It’s something I had to do.
Hardest lesson learned: The everyday struggles of keeping the organization going when there’s not a lot of funding attached to it. The constant need to raise money to do the work we are doing to help families.
Toughest organization decision: When I don’t have enough funds to cover a family’s request. I wish I could fulfil everything they need. That’s just not possible at this time.
Biggest missed opportunity: When we initially introduced our federal bill, not having the knowledge to remove the “mandate” and instead make it discretionary but include the funding. It was introduced by Senator Chuck Schumer and Congresswoman Yvette Clarke, both Democrats. We had the word “mandate” attached to the bill, which is against the Republicans belief in state government. It’s been reintroduced in 2018. We changed the language. We took out the word “mandate” to make it discretionary and our hope is it will move forward for a vote.
Like best about the job: Meeting the families. It’s all about the families.
Like least about the job: Raising money.
Pet peeve: People who are disrespectful of the issues of dealing with a rare disease.
First choice for a new career: If this wasn’t my journey, something in fashion. Because of my journey, I wish I was a doctor, or something involved in the medical field.
Most influential book: The 7 Habits of Highly Effective People by Stephen Covey
Favorite movie: Willie Wonka and the Chocolate Factory – the original, not the remake.
Favorite music: Jazz
Favorite food: Italian
Guilty pleasure: Binging on Netflix.
Favorite way to spend free time: With friends and with my daughter.
April 26, 2018